The truth slammed into me.

Huh? I thought, I’m four months along and you are telling me that I am having twins? This was followed by a couple days of amazement and pats on the back – and belly.

Jumbo straws and coffee stirrers

A week or so later, things got a little scary. One twin had a great umbilical cord insertion point, and the other had a lousy one. It was like one had a jumbo straw to get nutrients and the other had a coffee stirrer. Its called Twin to Twin Transfusion Syndrome.

At 19 weeks I rushed to Georgetown Hospital because I was going into early labor. My doctor drained my extra fluid, and it filled the better part of what looked like a 2-liter soda bottle.

The extra nutrients that the “jumbo straw” twin receives end up creating extra fluid. The jumbo straw idea makes it sound like that twin is the lucky one, but there is such a thing as getting too much, it can overwork the little baby’s heart.

And my little “coffee stirrer” twin was getting dehydrated and less overall nourishment. The odds didn’t look great. I scoured the internet for answers.

City of Brotherly Love

My high-risk doctor at Georgetown said that she had seen a lot of cases, but not many TTTS cases, and that I should strongly consider going to Children’s Hospital of Philadelphia (CHOP) for treatment. They were doing a clinical trial on Twin to Twin Transfusion pregnancies. They had experience with this.

What? Pack my bags and stay for the duration of my pregnancy in Philadelphia? My babies were due January 12th. It was still early September.

The Hamburgler

Where will I stay in Philadelphia? We would go broke on hotels. Answer: the Ronald McDonald House. Some of you might cringe at the name, how can one equate a nice place to stay with America’s fast food chain?

The two McD Houses that I ended up staying in both felt like home-away-from-homes. These places are run by people with giant hearts and the volunteers are incredible. Local volunteers brought dinners to the Houses most evenings, and let me tell you, good food is key to a keeping a pregnant woman happy ;).

The kitchen was huge, and the counters were constantly stocked with baked treats and goodies, AKA” the carb table”. We weren’t allowed to have food in our rooms, but I kept a secret stash – I was constantly hungry and ate like a 300lb man.

The Ronald McDonald Houses are basically there to support parents who are visiting their sick children in nearby hospitals. I wasn’t quite a parent yet, but somehow, pregnant people qualified.

So, I met a group of other women staying at the McD’s House who were in the same boat. Lots of bonding happened between us and the local therapy dogs that came to see us. 🙂

Rolling the dice

Amazing team at CHOP

Let me back up a bit. Rewind to the day my hubby and I drove up to CHOP to meet the doctors and staff performing the clinical trial. They performed various tests and explained the clinical trial – we would get put in one of two random treatment options.

Option one: the traditional treatment – drain extra fluid and hope for the best. Option two: laser surgery to reroute vascular flow and thereby even out the divvying up of nutrients.

With the flip of a coin, we would be treated in one group or the other.

At that time there was an 80% mortality rate if nothing were done, and still a 50% mortality rate if treatment was pursued including significant chances of Cerebral Palsy. Another option was selective-reduction of one twin. Shudder.

So, they sent us off with this information and told us to come back tomorrow so they could evaluate the tests and determine if we should be put into their program. We were in Philly but we had to head back out of the city and over the bridge to the Ronald McDonald house in Camden.

Smacked into knowing

As our heads spun around with this info, so did our car. We were making our way through unfamiliar Philly traffic during rush hour. There was a light rain falling. We were making a left-hand turn, someone waved us on.

Classic mistake. We made the left and an oncoming car suddenly appeared and smacked right into the passenger side door. Yes, where I was seated. Talk about bad days.

The airbags went off – in the front, on the side. I got out of the car and started crying and pacing, totally freaked out. I walked up and down the sidewalk. A random stranger tried to console me.

Our car- later at the garage.

The driver of the other car jammed her foot so hard trying to punch the breaks that I think she broke some toes. We both rode together in the ambulance. We took turns crying – she felt so bad about hitting a pregnant lady – which then made me cry even more.

It was my second visit to a hospital that day – this time I went to Shriners. I was having some contractions and they wanted to make sure there were still two little heartbeats pumping away in there.

The hospital held me overnight. Their heartbeats were strong. I calmed down and had a realization. I had a sudden knowing, if these guys could get through a car accident, then by God, they were gonna make it despite the odds. I mean otherwise, why would they have survived the accident?

The Coin Toss

The team at a Chop with me.

I went into the clinical trial. We agreed to accept whichever treatment was randomly selected. My mom came to hold my hand on the day we were to find out which treatment option would be ours.

My mom gave me incredible strength and we both had a deep knowing that whatever arm of the trial we were selected for, it was going to be the right option for us.

When we were selected into the traditional treatment arm (not the modern laser), we just couldn’t be disappointed, we knew it would all work out – mostly. Whatever will be, will be.

Life for the next couple of months

While staying at the Ronald McDonald House, I bonded with some amazing pregnant women who were dealing with either the same syndrome or something else equally as harrowing. We had Thanksgiving together. Some made it out with two babies, some lost one, some lost both. It was an emotional time.

I fared really well. I had so much support, my hubby, mom, and my rock-strong mother-in-law. They all came to babysit me and hold my hand while I was there.

Happy Birthday

On November 21st, at 32 weeks, I delivered two healthy preemies. Jack was 4lbs 6oz. and Cal was 3lbs 8oz.

Jack’s umbilical cord looked like a sausage and Cal’s looked like a shoestring.

They grew and got heartier, and we were able to bring them home a few days before Christmas.

Happy 10th Birthday Jack and Cal.

You are miracles, I am so grateful for both of you. How appropriate that you arrived just before Thanksgiving.

Wow, I get emotional every time I hear or think about your story with the twins and their TTTS. I remember when you were going through it & I would get updates from your mom & would give updates to my colleagues. We were all praying constantly. Thank God for happy endings!

Happy Birthday Jack & Cal, you were miracle babies & have grown into such wonderful, smart & talented boys with great personalities… and an amazing Mom! Love, Aunt L.

Happy 10th Birthday, Jack and Cal! Thank you for sharing your story again with us and keeping in touch with us in the Fetal Surgery department at CHOP. I still remember the phone call we received that you had been in a car accident. Hope you can return one year for a fetal family reunion!
Joy

Thank you so much for sharing your story with us. A family member who is 16 weeks along with identical twins has just found out that they have TTTS. I went right to the Internet for info on TTTS. Pretty upsetting! But, I was encouraged by your story and your happy outcome. I know that God is in control and He has given us some brilliant medical minds. So, we are looking with hope to a happy outcome like yours.
Gods blessings,
Kathy Cook

Very good website you have hhere bbut I was wanying to know iff youu
knew of any forums that cover the same topics talked about
here? I’d really like too be a part of community wheree I can get
comments from other experienced people tha share the same interest.
If you hwve any suggestions, please let me know.
Bless you!